"Carters Story" by Jenny Fawcett Ruklic

I've been a part of the hemophilia community now for 4 years.  One of the first things that impressed me was how many parents are the leaders in the hemophilia community.  One of these parents is Jenny Fawcett Ruklic.  It was a journey for her to even admit to herself that her son had a bleeding disorder, but she did.  Now she has an organization that is dedicated to raising funds for research to find a cure for hemophilia.  Recently, she posted her story, "Carter's Story", and I wanted very much to share it with you all.  Thanks, Jenny, for sharing your journey with us.  

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"Carter's Story" by Jenny Fawcett Ruklic:


Over the last few months, I have made so many friends via Facebook, and a lot have joined our Page Carter's Quest for a Cure, Mall in the Hall and Bids for Bruisers. The one thing that I think may be missing is our story. So, here is my rendition of what has inspired me to become the advocate I am for my son.

Jenny and Carter

Carter Stephan Ruklic was born June 12 2008, a beautiful 8lb boy with a beautiful head of dark brown hair.  The labour was interesting. I lost a lot of blood, and it took a really long time for the doctors to stop the bleeding, but I never thought anything of it.  I had a daughter 5 years earlier, and it was the same thing.  Everything went fairly smoothly.  We were released from the hospital the next day and sent home.  2 days later, the community nurse came by the house to do the heel prick and weight check.  All pretty routine until I thought of it later.  Carter`s heel bled for a really long time.  Again, I never thought anything of it.  The nurse took her information and left.

Carter and Cassie

The weeks went by, and I started to feel a little emotional, I think the beginnings of postpartum.  On week 4, we had an appointment to have Carter`s circumcision done.  My husband works crazy hours during the summer.  We own a landscape business.  So, he is working tons.  So, when the appointment came, I thought, "I can do this myself no biggie. . . " (Which, if I can recommend now: Take help when someone offers to go with you to this.)  The procedure was horrible, the most emotional thing I had ever had to go through.  I was crying and was so upset for seeing my son cry that way.

After the procedure was done, we went home.  I picked up my daughter from Aunties house, and we went home to spend the day in the wading pool and running through the sprinkler.  Since Carter was born, I was depressed and sad, and Cassie was missing her Mommy.  So, I thought I would spend the day with her hanging out.  Carter slept all the time anyway. Little did I know that this was the day that would change our lives forever.

When we arrived home, I went to change Carter`s diaper, only to find an entire diaper filled with blood.  I called my sister.  I hadn't gone through this.  I wasn't sure if this was normal.  She had a boy. . . She would know.  Tara told me there shouldn't be blood. . . PANIC. . .  All I could think was that the doctor ruined my son.  I called the doctor's office. He told me to go to the Children's Hospital.  I'm sure at that point he kinda knew, but nothing was said.  So, I called the husband, asked him to meet me there. Cassie, Carter, and I were on our way to change our Lives.

Jenny and Carter

We arrived at the hospital, and they took us right away.  They stitched up Carter with 2 stitches, apparently the circumcision split. . . owww, painful.  They asked us to stay for 1 hour just to see if it continued to bleed.  I was confused why would it still bleed.  Are they telling me that they don`t know what they are doing?  Anyway. . .  I sent Will back to work with Cassie.  He was in the middle of building a pond, and there was a storm coming.  So, he left, and I said I would call on my way home.  An hour later they checked and it was still bleeding.  In came the lab to take some blood work. I was so confused as to why they wouldn't let me go home. . . 

Two hours later, the blood work came back, but they are not telling me anything.  My brother in law shows up.  Roger didn't want me to be alone.  I hadn't called Will back yet, and then The doctors come back and say that there was a problem with the blood test, and they needed to run some more.  I tell them, "Fine, but what is going on?"  No one answers me.  Roger calls Will, and my husband is back with me at the hospital.

Around 7 at nite, we have been there for 5 hours. They send a lab tech in to tell us in very broken English that our son has a shortage of factor in his body.  I have no idea what he is talking about.  What is factor?  I just looked at Carter and started crying.  Keep in mind, I was still postpartum.  Finally, the hematologist comes in and tells us that Carter is a moderate hemophiliac. . . SHOCK. . .   He gives us the HTC information and tells us to come for a meeting with everyone on Wednesday, and they will be able to talk about everything and answer any questions.  I then spent the next 48 hours crying and sobbing, asking God why he would do this to Carter and our family.  I just wanted answers.

Jenny, Will, Cassie, and Carter

We went to the clinic and met the entire staff that was going to oversee Carter`s condition.  At this time we are also told that the lab made a mistake, and really Carter is a severe type A and not a moderate. . .  Do these people know what they are doing?  My blood was boiling. . .   They handed us this giant binder filled with really scary things: joint bleeds, muscle bleeds, spontaneous, what. . . , and on and on,  and a bag for the binder.  I felt like we were just given a prize for being the 100th customer.  lol

We went home, and I took the binder and bag and put it under my bed, cause as a child that is where the monsters go.  I spent the next 6 months in a state of depression.  My test came back.  I have 32% factor in my body.  It explains all the bleeding episodes as a child, and knee and ankle problems.  I also had Carter retested. . . denial.  So, 6 months went by, and I didn't want to talk about it or really acknowledge it until Carter had his first bleed:  rolled over on a toy and bruised his back right on kidney area.  So, I started to cry.  Then, all of a sudden, I stopped, looked at Carter, smiled and said, "Mom's got u".  I ran to our bedroom, and got the binder from under the bed.  The monster was looking me in the face, and I needed to help my son.  So, I took a deep breath and did what I had to: admitted that my son has hemophilia.

After that day, I have hit the ground running.  I engulfed myself with information.  We attended the society events and I even went to a women's weekend for women with bleeding disorders.  I met people and talked to everyone I knew about Hemophilia.

"Carter's Quest" Bottle Drop

2 years later, our lives have changed so much.  My son is an amazing little boy and normal.  We are joint bleed free, 2 muscle bleeds, and numerous soft tissue bleeds and head injuries.  He wears a helmet at times and knee pads.  I have managed to train in giving my son his infusions at home, no port, I find the vein 3 times out of 5.  I joined the board for the Southern Alberta Chapter of the Hemophilia Society.  We attend The Parents Empowering Parents weekend, which, if anyone has the opportunity to do, do it.  My husband and I are not anything special, but we love our kids and Carter is no exception.  Aside from the underlining condition, he is very normal.  He loves to cuddle, he loves to jump, and he gets hurt. . . 

I can`t change what we are going through, and I can`t take away the pain that Carter may go through in his life, but I can be his strength.  I can be here to tell him that he is special.  God chose us to be the ambassador to his needs.  I will do everything in my power to raise Carter and Cassie as I would any other children: with morals, strength and courage.  I am strong today because of my children and not in spite of them.

Over the last little while, I have met some extraordinary people, and I will cherish their friendship through Facebook.  I love all my hemophilia friends.  Thanks for being here to help guide my way.

Love to all. . . 

---------->  Click here to visit the Ruklic's website <----------

Meet Craig Wright

Craig Wright

Over the past few months, I've been learning a lot about a man named Craig Wright.  Craig was born in August of 1953.  After he was born, he was diagnosed with severe hemophilia when he cut his lip and it wouldn't stop bleeding.  He spent a lot of time in the hospital because of his hemophilia and received gallons of blood from numerous donors.  Life for a hemophiliac was much harder back then.

Craig grew up on the family farm in Prince Albert, Saskatchewan Canada.  At a young age he expressed a desire for farming.  He was told that he should give up that dream because a life of farming would be too dangerous for a hemophiliac.  That did not stop Craig from following his dream.  He grew up to take over the family farm.  He married, and he and his beautiful wife were blessed with 3 precious children.

Craig with his family

However, the Wright's lives were turned upside down one day when 32 year old Craig learned that he had contracted AIDS from bad blood.  His daughter, Ashley recalls:  "I was quite small (maybe 5-7 years old).  I remember seeing one (commercial on HIV/AIDS) and saying, 'Hey Dad, that's you, right?' and immediately after running to my room because I thought I would be in trouble for speaking about it. We all knew, it was NOT something you brought up!"

Ashley remembers telling her best friend about her dad's condition.  "It was the middle of winter and recess time and I asked her to sit with me on a little snow hill and told her."  Her friend didn't understand the reality of the situation, but knew she was sworn to secrecy until Ashley decided to tell others.  It was three years later in 6th grade that Ashley decided to share the situation with her classmates.  She never imagined that her dad would be laid to rest before she would finish 7th grade.

Craig's daughter, Ashley with her son, Parker

As Ashley shared her memories with me, I was deeply impressed with her parents.  Ashley remembers, "They came into the school and did presentations for the class as well as the parents, and I know they had to go through a whole bunch of red tape to even think about discussing such a topic with children.  I remember being scared but yet so proud of my dad for standing in front of the class and explaining to them in children terms what was going on in his body and why.  Needless to say, the children took it better than the parents.  I distinctly remember at the parent info meeting, the parents of the children in my sister's class saying, 'We do not want your daughter playing with our children.'  How do you even respond to that?!  Being a mom now, I have no idea how they handled that without tears!"

Ashley remembers that her dad missed being in his band.  She also remembers the "countless hours and hours he spent on the phone with lawyers and conference calls as well as the many trips to the lawyer's office or the lawyer coming to the house."

Craig was driven by truth and justice.  When he was infected with a deadly virus as a result of others' mistakes, he wanted those responsible to be held accountable.  He dedicated the remainder of his life to fighting for compensation to the families affected by bad blood and holding the responsible parties accountable.  He was deeply involved on "The Krever Commission".  This commission fought for better blood screening, safety of blood products, but mostly for the compensation for the affected families of bad blood.

Craig's grandaughter, Charlie

The Globe & Mail June 1, 1996 states,

"The mandate of the Krever inquiry is twofold:

-Determine how and why more than 1,200 hemophiliacs and transfusion recipients contracted between 1980 and 1985 the virus linked to acquired immune deficiency syndrome and why another 12,000 Canadians contracted hepatitis C from blood and blood products between 1980 and 1990;

-Recommend ways to revamp the blood system so a similar disaster is not repeated."

From studying the documents that Ashley sent to me for this post, I learned how the organizations responsible for the bad blood epidemic were quite upset about the Krever commission.  They thought that the notices of "potential misconduct" should be quashed because they unfairly stigmatized them. 

In 1993, Craig was interviewed by The Leader-Post.  He stated, "The knowledge we are getting now is the governments knew in 1982 and didn't act until 1985.  The time frame is so bizarre, . . .  How do you justify not letting hemophiliacs at the grassroots level know?  How can they justify not publicly putting out a news blurb saying:  'Hemophiliacs, be careful,'?"

In the end, Craig was not completely satisfied with what the courts decided the compensation should be, but he was told that it would be another 7 years before it would make it in front of a judge again.  Since he knew he wouldn't live long enough to see it go to court again, he agreed with what would be given.

It seemed that as soon as Craig knew that his family would be provided for, his body started shutting down.  Then on May 9th, 1996 in a Saskatoon hospital, 42 year old Craig Wright passed away.

Craig's grandson, Parker

I am so inspired by the life and legacy of Craig Wright, and I am so very saddened for his life that was lost.  We can all learn from this man's example.  From the moment he learned of his hemophilia, he decided that it would not keep him down.  Craig lived his life to the fullest.  He was loved and respected by his family, friends, and even people from his local and national government.  When carelessness led to his contracting the AIDS virus, he did not roll up in a ball and sulk or give up.  He let it fan the flames in his heart.  He stood up and fought for his family and many others.  When AIDS ultimately claimed his life, many honored him.

One of the saddest parts of this story is the grandchildren who never got to meet him.  Craig's daughter, Ashley, is brokenhearted that her little ones, will never know their grandfather who was such a hero.  No, Charlie and Parker will never look into their grandfather's eyes as they grow up, ride on the tractor with him on the family farm, listen to their grandpa's singing and guitar playing, or hear his stories from his own lips.  But, I believe they will know their grandpa.  He lives in the hearts and memories of so many people.  I believe Charlie and Parker will be inspired by their very special grandpa's legacy.  Parker's blood inherited the mutated gene carrying hemophilia, but that blood has a legacy of much love, determination, and strength in it from his grandfather, Craig Wright.

You may be wondering. . .

Silas - 1 month old

My sister, Julie, called me yesterday and wanted to know what would be happening with Silas now that we know he has hemophilia.  She asked some really good questions, and I thought some of you may be wondering about some things too. 

Q:  Is Silas getting bruises or bleeds yet?
A:  No.  Silas has no bruises.  Some of you may remember that Eli didn't get any bruises until those 2 hematomas showed up when he was 4 months old.  It is normal for hemophiliacs to have bruises (most always hematomas) all over just from normal life when they get more mobile.  These "superficial" bleeds do not need to be treated with factor, but bruising on a joint needs to be watched carefully as it may go into the joint. 

Q:  Is there ever any difference in severity levels?
A:  There are different levels of severity between hemophiliacs, but not within the same family.  My gene mutation is called 22 inversion.  That gene mutation is always severe hemophilia A.  Ana is a carrier like I am.  She bruises more easily, but she and I have another X that makes up for the hemo X.  Eli and Silas do not have another X.  So, they have severe hemophilia A, which means their bodies make <1% of clotting factor 8. 

Q:  When will he need to get factor?
A:  For the first year or year and a half of Silas's life, he will be receiving factor as needed.  For Eli, the first year included soft tissue bleeds in his cheeks (both sets ;o)  ) and worrisome head bumps (none turned out to be a head bleed). 

Q:  Will he be getting a port? and when?
A:  A port is not always a necessity; it is a choice.  We chose to get a port for Eli because we wanted to preserve his veins, and have an easy access in case of an emergency and a vein would be hard to find (dehydration, etc.)  We will probably get a port for Silas since it has worked out so well for Eli, but we will be making that final decision later.  He would get a port when he needs to begin prophylaxis.

Q:  When will he start prophylaxis?
A:  He will begin "prophy" when he is 18 months old or when he gets his first joint bleed.  Whichever happens first.

Q:  Are we doing anything extra to prevent bruises and bleeds?
A:  Yes.  He will start wearing a comfy cap when he starts spending more time on the floor (for 4 obvious reasons ;o)  ).  We bought a sleepy wrap because it is stronger and softer on him than a Maya Wrap or Moby Wrap.  We were not planning on letting him use the jumperoo, but some of my online hemo mom friends told me that they did not have any problems with the jumperoo at all and in fact, it helped their boys' legs get stronger.  Another mom suggested a product called Hugga-Bebe.  It is extra padding made for jumperoos and exersaucers.  It looks excellent, and Matt and I are looking into getting one and trying the jumperoo.  We will use knee pads and elbow pads to protect his joints, and pad his clothing.  By the way, an excellent company that makes padded clothing is Bruz Wear.  We have one pair of pants from them, and they're adorable!


I added a few more questions than Julie asked, but you may even have more.  Please ask anything in the comments section below.  We love to help people gain a better understanding of hemophilia.  Sometimes Blogger doesn't let people comment.  If that happens to you, let me know.  You can comment on facebook or email me at bubblewrappedbirth@yahoo.com

Love and Guilt

Eli, Malakai, Isaiah, and Ana

I know that it is not my fault that 2 (maybe 3) of my children are affected by hemophilia.  I know that genes are more than just  a mutation, and that only those particular X chromosomes would've made each one of our children.   If they had recieved any other X, they would be a completely different child.  Looking at it like that, it makes it easy to be thankful for everything that comes with or does not come with my children's genes because I want THEM.  If hemophilia comes with the package, so be it.  However, last night when Ana showed us a mysterious bruise that she discovered on her hip, I felt an unusual weight of guilt. 


It doesn't make much sense.  I know all the facts.  Maybe it's just because I'm extra emotional with Silas's birth coming so soon.  I don't know, but when I looked at that deep purple bruise on my little girl, I felt like I did that to her.  She is a little ballerina.  She loves all things to do with homemaking and babies.  She is the spunkiest little girl I've ever met.  I love her so much. 

I don't need to feel guilty.  If carrying hemophilia is part of what God has for her life just like it is part of what He had for mine, I praise God for it.  That sweet little princess is going to take the world by storm!  She will have opportunities to reach people that she wouldn't have otherwise. 

I am concerned for some things like:  Will she have any bleeding issues when she hits puberty?  Will she have any issues with childbirth?  Will her factor level ever go lower?  I don't know the answers to these things, but God does.  He loves her even more than I do, and I trust Him.

Tater (Ben): Liz and Bubba (James) Purvis's Story

I met Liz Purvis on facebook.  I was searching for hemophilia birth stories specifically ones where the baby suffered a bleed.  I just wept when Liz shared her story with me.  Since then, she has shared pictures of little Tater on BWB's facebook page.  This post is dedicated to Tater and his loving parents, Liz and Bubba.  The following is her written story and the captions to the pics are in her words.

~Our Story~

I would like to introduce myself. I’m Elizabeth and I’m married to James. We have a beautiful son named Benjamin. He has severe hemophilia A with inhibitors.. I’m a nurse (but I stay at home with Ben) and my husband is in the army. Here is our story.

After 6 days of my water being broke. 3 internal monitors placed.
Finally a csection due to failure to decend. 5 weeks early

subgaleal bleed from 3 internal
monitors being placed

We decided to get pregnant. Nothing ran in our families so we were expecting no complications. My pregnancy was wonderful. Then at 34 weeks my water broke. I was admitted to the hospital and 6 long days later Benjamin came in to the world at 35 weeks via c-section because he failed to descend. I kept asking what his apgar score was (a score that basically says how well the baby is after birth) they would not tell me. They put a hat on his head. Let me kiss him and my husband held him for a brief second. And they whisked him away. When I was in the recovery room they told me that he was in the nicu on oxygen. I finally made it to the floor and my husband said they would not let him see the baby. We called up there and they said to come pick up some paper work and supplies for breast milk. My husband came back and told me there was something wrong with Bens head. The next morning the doctor came to talk to us and told us that Ben had a subgaeal hematoma. That is a bleed in between the scalp and skull. It looked horrible. They had no idea what caused it. They needed our consent to give blood transfusions. They ran a clotting test called a Prothromin Time (PT) but every sample clotted before the lab could run the test. After a week they said we could take him home. We roomed in with him. They did a heal stick on him and he bleed thru a band aid paper towel house shoe and six blankets. He no longer could maintain his temperature. They took him back to the nicu and ran tests. The next morning they did a ct scan and found a subdural bleed. This is a bleed between the brain and skull. They wanted consents to start cryoparticiapate which is packed blood cells and give him a drug called Novo7. They were consulting with a neurosurgeon. They told us the baby would need brain surgery to evacuate the blood. We went to see him. We were waiting for the next step and all of a sudden they said it was time for the surgery. We had a priest come and baptize him. 

Right before the surgery.
Subdural bleed causing stroke and seizures.

3 internal monitors placed. They "screw"
into the scalp. And they "came out"

And he went down. The surgery took about 2 hours. When the surgeon removed the skull the hematoma expelled itself because of all the pressure. He also had some clots in his brain that they removed those clots caused him to have a stroke. They inserted a Picc line in his head. So they wouldn’t have to keep doing ivs in his hands. They kept him on a ventilator and in a medically induced coma. After a few days we were transferred to a large city where we immediately got a diagnosis of hemophilia a. His level was 16%. They started advate and weaned him off the ventilator. Ben did so well. He started eating on his own so they could remove the feeding tube. He held his own temperature. It was wonderful. Then his IV accesses stopped working, even the Picc line. We were then bombarded with people who wanted to put in a central line. I asked for a central line for days. We consented for one and they decided to put in a picc line at the other hospital. This whole time a hematologist only spoke to us to give us the diagnosis. NO other time. We kept asking. SO after a hematologist spoke to us and told us he had to have the broviac (central line) to go home. He did very well with that surgery.

Healing at surgical site

We were soon able to take him home. The only thing we knew is we had to give advate three times a week and they told us he would never get to be a normal boy. We had lots of questions that they would not answer. Like can he play baseball or ride a bike. Do we get extra advate in case he falls? You know stuff like that. They said our questions would be answered later on his life. I got tested and I am a carrier at 12%. And we retested Ben and his level was <1% so he is a severe. Lots have happened since all of this. He now has a port. He also has an inhibitor. That complicates the situation even more. I have met some awesome people thru all of this. He is doing really well. We attend Physical therapy and occupation therapy and many many more appointments.

Tater's scar 17 months later

"Pushing" for a Gentle Birth

My husband and I have had 4 beautiful all natural water births, and are looking forward to our 5th in the next few weeks.  If you've read my birth plan, then you may have noticed #6: "I will not start pushing until my body starts pushing on its own. If I get an undesirable urge to push before then, my midwife will check to make sure I am fully dilated. Ideally, I will try not to ever push to make sure the baby comes out as easy as possible."  I want to use this BWB post to talk about my experiences with pushing.

Isaiah still in water seconds after his birth

With Isaiah, our first born, I pushed with every contraction as soon as I found out I was 10 cms dilated.  I felt like I was pushing against a brick wall.  Now, I know that I should've waited until my body started pushing on its own.  Of course, my midwife wasn't intending on my forced pushing.  She told me to push if it felt good.  I was pushing because I thought that my baby would get into my arms faster if I did.  Well, that pushing lasted for 4 hours.  Isaiah was fine.  Our midwife kept a close watch on his heartrate, and when he started crowning, she kept a close eye on his skin coloring.  The only issue he had was that the plates in his skull were very overlapped, and even caused the roof of his mouth to not be smooth which effected his ability to latch on well.  Isaiah does not have hemophilia, and I am so glad because I think all that time in the birth canal may have caused problems if he had hemophilia.  As it was, the overlapping issue was resolved in a few days, and he was just fine.

Right after Ana's birth

Ana, our second, was another story!  I didn't mention in the previous paragraph that Isaiah was 9#8oz at birth!  Well, Ana was only 7#4oz.  That is a significant difference!  My midwife would not tell me when to push.  She said, I would let them know when it was time for me to push.  So, I waited.  It didn't take long at all until all of a sudden I was pushing with a contraction.  It just happened!  I wasn't trying to push or anything.  It was a natural response to my body's birthing process.  Within 6 minutes, she was born.  It was amazing!  Ana is a carrier of severe hemophilia A like I am, and did not have any issues at birth.

Elijah hours after delivery

Our third birth, Elijah was very different from Ana's birth.  If you read his story, you'll get a better idea.  One thing I did right was that I "tested" pushing with a few contractions, not a lot, just a very little start of a push.  It did not feel right.  So, I did not push.  I only started pushing when it felt right.  Which brings up the issue of epidurals.  Yes, they occasionally have their place, but they should be avoided for so many reasons.  Knowing when it feels right to push being one of those main reasons.  I learned in my first birth, that you can push too soon even after you're dilated to 10cms!  Ok, off the soapbox and back to Eli's birth.  When it did feel right to push, I quickly realized that this baby was BIG.  He wasn't coming out easy like Ana did, and I didn't want him to be in the birth canal as long as Isaiah was.  So, I P-U-S-H-E-D harder than I had ever pushed before!  When his head came out, my body rested as it always does.  It felt like forever!!  When I began pushing again and his shoulders and torso came out, I thought he was totally out, and went to scoop him into my arms.  "One more push! one more push!" my midwife and husband said.  I gave another little push, and that big 10#14oz bubba was in my arms!!  He was pink, and had no bruising at all.  If you read this blog, you know that Eli is our hemohiliac.  We didn't know until he was 4 months old that he had hemophilia.  I believe with all my heart that God's grace, the gentleness of his birth and my management of the pushing stage of his birth are credited with his safety.  It blows me away that our severe hemophiliac was the one that was almost 11#s at birth! 

Malakai just minutes after delivery

Malakai's birth was a breeze.  Like Ana, I didn't have to actually push at all.  My body just pushed him right out.  He was only 7#12oz.  He did have a meconium issue after his birth, and he was fine once they got it all suctioned out of him.  If you would like to see one of our births for yourself, we have a very non-graphic video of Malakai's birth on youtube.  His birth was the first one that we planned in the knowledge that our baby had a 50% chance of having hemophilia. 

All of our births have been water births.  I am a true believer in water birth.  I think it is a major cause of the gentleness of our births.  I have blogged about this before in:  Why I Love Water Birth:part 1 and Why I Love Water Birth: part 2.

The conclusions I draw from all my various pushing experiences are these:

1.  Don't push just because you are 10 cms.

2.  Focus on relaxing and staying "on top" of the intensity of your contractions.  If you are working with your body, your body will naturally start pushing on it's own, and you may not have to push at all.

3.  Only push when it feels right.  Sometimes, with very large babies, it may be necessary to push with your body.  I personally do not believe it is good for a hemophiliac to stay in the birth canal for a long time based on seeing what happened to Isaiah's head.  So, I do believe I did the right thing in pushing very hard with my body to get Eli out as soon as possible.

4.  Being as relaxed as possible, and in a position that allows gravity to help the process helps the pushing stage be much easier on mom and baby.

Thank you for your interest in Bubble Wrapped Birth.  As always, please don't just take my word for anything.  Do your own research.  Talk to your doctor or midwife.  This is what I believe and what I know works for me.  However, I do hope I have sparked some thoughts about the 2nd stage of labor that you may not have had before.  Thanks for reading!

Elijah



Eli and Silas

Elijah is 3 1/2 years old.  He will be 4 this December.  He is our third born child, and our only hemophiliac.  When we were expecting our fourth, Malakai, a big part of me was actually hoping he would have hemophilia too so that Eli would have a hemo buddy.  The strangest thing happened the moment we recieved the news that Malakai was unaffected.  I was sad.  I was so sad for Eli.  He was still my baby, not even being 2 years old yet.  Now, 2 years later, I am so thankful that Malakai does not have hemophilia.  As you probably know, we are due to have our fifth child, another boy, in 4 weeks.  Again, we will find out after his birth if he has hemophilia or not.  Elijah has been expressing that he wants Silas to have hemophilia like he does.  This breaks my heart!  Of course I would never choose a bleeding disorder for any of my children, but if Silas does have hemophilia, then that is part of who God made him to be.  I know it would be very special to Eli if Silas had hemophilia.  God has a special plan for each one of our children, and for Eli, having hemophilia is part of that plan.  Please pray for him.  I don't know what the next few weeks will reveal, but I want Elijah to be just as happy about Silas even if he does not have hemophilia.  I don't want his little heart to be broken if Silas also turns out to be unaffected.  Please please pray for him.  He is such a sweet, passionate, strong little guy.  His older sister, Ana is a carrier like I am, but it's just not the same.  Elijah is very much on my heart as Silas's birth gets nearer.  I love him so much.

The Last 4 1/2 Weeks. . .

Four and a half weeks ago, we found out that the baby we are expecting is a boy.  As you probably know, this was significant news for us since I am a carrier of severe hemophilia A.  I've been off facebook a lot ever since. This was first because of a virus that hit our family right after finding out our little one is a boy, and second because we have a lot going on right now, and I have a lot to mentally and emotionally process.  I want to take some time and talk about that.

When I first saw that second pink line appear, I knew I was having a girl.  Of course I was having a girl!  I was so emotional, and we already had 3 boys and 1 girl.  Also, planning a birth for a girl is much less stressful for us than planning a birth for a boy, and I just knew that this time, we'd get a break.  This summer, we are moving, Matt will be going back to school in the Fall to pursue a nursing degree, and work full time on top of that.  It is very exciting, but also pretty stressful.  I was thinking that at least the birth planning would be a breeze.  We are hoping to move to MI where we already have a great midwife.  A girl would mean planning a simple homebirth with a midwife I already know and love.  Even though I said, "Oh, yeah, we could be having another boy!", I didn't really believe it.  I knew I was having a girl.  Then, it was time for our ultrasound. . .

The technician was so friendly and happy with us about our expecting our 5th.  She couldn't see anything revealing for what seemed like so long!  She was busy measuring all kinds of things, and then. . .

"Well, you've seen that before!" she said.

It was NOT the cord!  We saw very clearly that we were having another boy!  Matt and I just laughed.  4 boys and 1 girl?!  Wow!!  I was already very much in love with this tiny little guy, and now I knew that he was a HE.  We even knew his name:  Silas Martin Reeves. 

Even though we were very happy, we were in shock.  A boy meant a lot more work.  Yes, he could have severe hemophilia, but that wasn't what was weighing so heavily on me.  I was counting on having a break this time with birth planning, and having a simple homebirth.  With all the things we are dealing with right now, this was not going to be one of them. . . BUT now I knew it was. 

2 days later, our family was hit by a horrible stomach virus.  Eli was first.  He had a fever, and since he has a port, that meant 48 hours in the hospital.  It hit us all, and it was bad.  It lasted 5 days for each person, and it took 2 weeks total for us all to be well.

After we were well, I started thinking about Silas's birth, and things started hitting me.  Once again, I don't know where we are going to be for this baby's birth, and now, I have to plan for a severe bleeding disorder!  I still am not convinced that there is any danger for a severe hemophiliac with a gentle vaginal delivery unless drugs or interventions are involved (with the exception of breech, placenta previa, etc).  My main concern for planning a birth for a boy has always been getting his cord blood tested.  If we didn't get his cord blood tested, we would have to take him in for a blood draw which is traumatic for a baby. 

Our 4th, Malakai, was our first hospital birth.  His birth was awesome, but there were some things we didn't like especially afterwards:  the lack of rest, all the strangers (drs and nurses) coming in to touch the baby, the fact that the hospital pretty much owns the baby until they discharge you both, the ridiculous hearing test, the required vitamin K (although they did allow us to use oral instead of a shot), having to be separated for a few minutes from the baby so they could help him start breathing at birth (ended up being meconium, and they did a great job; but at home, we would've been set up right at the pool), our children couldn't be there at all due to a flu epidemic at the time (not to mention the fact that there was a flu epidemic at the time, and we were there with our newborn!), and the heel prick.  Malakai didn't have hemophilia, and we had an amazing hospital experience to say the least.  All the issues I just listed are nothing compared to what I've heard other people complain about, but still. . . I am a homebirther at heart.

I do not think that homebirth is the right choice in every situation, and maybe it's not the right choice for Silas.  I don't know yet, but I can't plan his birth until I know where we are going to be.  Matt has applied for so many jobs in MI, but has no leads.  He has started applying here in NY as well in case there is nothing in MI.  Soon, he will probably expand his search to other states as well.  We really can't afford to be picky right now!  Our income will end in just a month or two.  I decided that right now, I will just focus on keeping myself and Silas healthy, and when I know where we will be,  I will start planning his birth.  Before then, it's just too overwhelming for me. 

Even with all the birth planning stress and the possibility of more hemophilia in our family, I am SO excited about our new little guy!  Silas is a sweetie.  I am 21 1/2 weeks along now.  I feel him moving around more and more everyday.  My heart is full of love for him!  I know that everything will all work out, and when he is safely in my arms, I will look back on these days and smile.  God has always taken care of us.  We have been in more stressful situations that this, and everything is going to be ok. 

Thank you for your patience right now, and all your love, support, and prayers.

Hemophilia Awareness Month Daily Facts (posted thoughout March on my facebook profile page)

1. Hemophilia is an X chromosome genetic mutation. That's why girls are carriers. We have another X to make up for the affected X. (There are exceptions, but it's complicated) Boys don't. So, a mom that carries the gene (ie: me!) has a 50% chance of passing on the gene with every pregnancy. Dads who have hemophilia will never pass it on to their sons since their sons get their Y chromosome. However, all their daughters will be carriers since they get his X chromosome, and the affected X is the only one he has to offer.

2. It is very nice for a hemophilia mom to spend the evening at the salon (via birthday money) after an exhausting day at clinic with all the children. . . ;o)

3. The most common hemophilia gene mutation is "22 inversion". All the right information is there, but inverted in a section of the X chromosome. Therefore, the information that is there cannot communicate to get the job done (in this case: make factor 8!). This is the gene mutation in our family.


4.  When you have a child with hemophilia, everyone is affected. We are not just a family of 7 with 2 hemophiliac boys. Our family has hemophilia. We may not all have it in our bodies, but we have it in our family, and we deal with it everyday. We are all in this together! :o)

5. When my Dad was a young boy in the 1940s and 1950s, most hemophiliacs didn't make it through their teen years because the only treatment was whole blood transfusions. Their was no preventative treatments. The few that did survive, suffered major bodily harm from their bleeds, and their bodies are mangled, but they're probably some of the strongest men you'll ever meet. The most impacting thing for me is to hear these men speak of the different life their grandsons have now that they have factor. (Based on the film,"An Unexpected Life. Living with Hemophilia." Presented by the Alta Bates Summit HTC)

6. To make a clot, our bodies make a platelet plug, then a fibrin clot to hold it all together. Hemophiliacs make the platelet plug, but not the fibrin clot. With little cuts and scrapes, the platelet plug is sufficient, but sometimes not when they are in the mouth. Saliva breaks down the platelet plug, and makes a lot of trouble! So, there is a liquid medicine called "Amicar" that is available to help. Amicar prevents the saliva from breaking up the platelet plug. Sometimes, this is so effective, factor is not needed! Yay for Amicar!!! :o)

7. What are the leading causes of bleeds for a little hemophiliac during childbirth? forceps, vacuum, internal monitor

8. How does factor work during a joint bleed? Blood starts entering the joint capsule. It fills up with blood. The factor helps the bleeding stop. Digestive enzymes eat away the blood, but also eat away at the cartilage and bone. Once a joint has had a bleed, it will always be more susceptible to getting more bleeds.

9. One of the greatest threats to hemophiliacs today is an inhibitor. An inhibitor is when their body starts rejecting the factor it needs so badly. When this happens to a factor 8 deficient person (hemophilia A), they are treated with factor 7 until the inhibitor is resolved. Clotting factors work like dominoes, and factor 7 is a good plan b for factor 8 deficient hemophiliacs because it allows clotting to skip a step. It is not easy. You have to infuse the factor 7 a lot more often than factor 8. Sometimes it takes a very long time for an inhibitor to go away.

10. Did you know that the worst position to give birth is lying on your back*? This position reduces the size of the pelvis by up to 30%!! This is especially dangerous for babies with hemophilia since that would threaten the use of vacuum or forceps if the baby appeared to be "stuck", and those interventions are the leading cause of headbleeds for newborns with hemophilia. Get off your backs, ladies! ♥
*There are exceptions to this.  Sometimes, a woman's pelvis is shaped in a way that consistently causes back labor, and lying on her back is the only way to get the baby to turn.

11. Carriers of hemophilia have varying factor levels. Sometimes their factor level is well within the normal range. Sometimes it is the low end of normal. Sometimes it is so low they qualify as mild hemophiliacs. Rarely, it is low enough to qualify them as severe hemophiliacs. I thought this wasn't possible until I met a girl with severe hemophilia. The explanation for this is in how the chromosomes split and multiply soon after conception. Another interesting fact is that carriers typically have elevated factor levels while nursing or pregnant. Since I have been nursing and/or pregnant for the last 8 years, I don't know what my regular factor level is. When I was tested while nursing Eli and again while pregnant with Malakai, it was 90% (within normal range). When I was in my 3rd trimester with Silas, it was 190% (high end of normal).  Ana was tested and her level was 44%.  Normal factor level is anywhere within 40%-200%.  I can tell you that I used to bruise a lot more than I do now!

12. When a person is having a bleed it feels like burning, swelling, sharp pain, or bubbles/tingling. Other descriptions include: "when a joint swells up with blood it is like having cement in there causing you not to be able to move"

13. It is super fun to launch caps off of empty syringes after prophy. . . ;o)

14. When you have a child with hemophilia, you no longer take it for granted when you actually can just "kiss it and make it all better" with a non hemo child or a minor injury with a hemo child. ♥

15.  "Hemophilia is a genetic bleeding disorder that prevents the blood from clotting normally. The main symptom is uncontrolled, often spontaneous bleeding. Internal bleeding into the joints can result in pain, swelling, and, if left untreated, can cause permanent damage.'  -Jennifer Grizzard Smith

Why I Love Water Birth: part 2

Before Ana could start walking, we were looking at two happy pink lines again!  We had been in IL for Isaiah's birth, MI for Ana's birth, and now we were in CA looking for a midwife.  We couldn't possibly have more than one baby in any state, could we?  We found the best midwife for us, and began planning another home water birth. 

I knew I was in labor at about 1:30am.  I labored in bed for a while on my side.  I got on my knees and leaned over a chair, all the time moaning through contractions.  By now, Isaiah was about 1 month from being 4, and Ana was about 2 months from being 2.  I had practiced these birth noises with them so they wouldn't be scared when the time came.  It worked.  They weren't scared at all.  I had nice breaks between contractions too, which really helped.  Isaiah wanted to help me so badly, but kept getting in people's way.  So, I asked him if he could hug me through my contractions.  He was my doula for this birth!   

The pushing stage for this birth was way more intense than it had been with Ana's birth.  For the first time during active labor, I called out to God, thanked Him for this baby, and that "I can do all things through Christ who strengthens me" (Phil 4:13).  When it was time to push, I pushed like I had never pushed before.  His head came out.  There was a small break before the next contraction (seemed like forever!).  Then, I was pushing again.  He was so huge that I thought he was completely out when he was only out to his waist!  Elijah was 10lbs 14oz!  I couldn't believe it!  His birth was so gentle, and he was a beautiful chubby newborn.  Four months later, we found out he had severe hemophilia.  I am so thankful that we had such a gentle birth for him.  I believe the water birth was a major reason why he was so big and did not have any bleeds or bruising, and I did not tear at all. 

By the time we were expecting our fourth little one, we knew that I was a carrier of hemophilia.  I have written all these stories before, and have recently posted the story of "Our Journey".  Please read it to get the full story of how we began birth planning with the knowledge of hemophilia being a possiblility.  We moved from CA to NY when I was 6 months pregnant.  I found a midwife, and we started planning a homebirth with the goal of drawing cord blood and transporting the specimen from home to a lab.  That plan did not work out.  We had to consider a hospital birth.  I met with the perinataltologist.  I explained to her that water birth was the safest, most gentle way I knew how to birth, our large hemophiliac baby had been born in water at home with no problems at all, and I insisted that our fourth baby's birth was just as gentle.  Malakai was the first water birth ever for this hospital.  His birth was so gentle that his water never broke until his shoulders were born. 

I know I've shared all these stories in length before, but I wanted to give a fresh review to illustrate where I'm coming from with water birth.  Based on my experience, I love water birth because:

• It calms my pain and discomfort.
• It relaxes my body.
• It softens my perineum, and helps me not tear.
• Because I am so relaxed, I can get in the best possible position for my pelvis to be at maximum size.
• I can easily move to different positions at will.
• Because I am so relaxed, my whole body opens to birth my baby as gently as possible.
• It gives me my own space, and I feel safe. 
• Being in the water helps me feel covered, and I don't feel so exposed and vulnerable.

I am now 13 1/2 weeks pregnant with our fifth baby.  Malakai is 16 months old, Eli is 3, Ana is 5, and Isaiah is 7.  In about 5 weeks we will find out if this baby is a boy or a girl.  There is no question that we will be planning another water birth.  We hope to have a home birth, but if we must consider a hospital, we will plan a water birth there.  Hemophilia babies need a gentle birth even more than other babies do, and I am so thankful that we already practiced such a gentle way of birthing even before we knew hemophilia was a part of our lives.

Our Journey

I was an avid natural birth advocate way before I knew what the word hemophilia meant.  After our third child was diagnosed with severe hemophilia and I found out I was a carrier, I began to ask people a lot of questions.  I asked other hemo moms, doctors, nurses, midwives, anyone!!  I wanted to know if my beautiful home birth days were over, and I wanted to know the real risks posed to baby hemophiliacs at birth.  It was then that my Bubble Wrapped Birth journey began. 

I have heard many stories, read the studies, looked at medical reports, and read our recommendations published in Hemaware magazine.  I have never once read a birth story where a baby had a gentle birth with no drugs or interventions of any kind, and ended up with a bleed.  In fact, all the birth bleed stories I've read have been births with drugs or interventions such as vacuum or forceps. 

I am committed to planning safe deliveries for each of my children.  I've learned a lot from other hemo families, midwives, and my own experience.  My husband and I have learned what works best for us and allows us to have the most gentle birth as possible.  We use water birth.  It allows me to fully relax, move effortlessly, and be in the greatest positions that open my pelvis to maximum size.  There are some situations that we have decided would mean the safest delivery would be a c-section.  These include placenta previa and a breech boy (maybe girl, not decided yet). 

The bottom line is this.  We believe that a gentle vaginal birth is most beneficial to our children unless one of the above complications become evident.  In this Bubble Wrapped Birth journey, I may come across other reasons for scheduling a c-section.  My concern is what is best for my babies.  Period.

As far as home birth, I birth at home when I believe the hospital situation threatens dangerous interventions and does not support our birth plan.  One hard thing we've come across is how to get the cord blood tested from a home birth.  It was for this reason our fourth child was born in the hospital. 

His birth was perfect, and just as gentle as a home birth.  After he was born, he had a meconium issue, and needed suction and breaths.  That was a first, and not fun.  He was ok, and I thought the staff did a fine job taking care of the situation.  If we had been home, we would've been set up right at the side of the pool.  He would've been able to be suctioned, and get breaths on a flat warm surface without cutting the cord or leaving me.  The baby care at the hospital was also something new for us.  Home is much gentler on the baby, and we are in full control of what happens with our baby.  In a hospital, we dealt with required procedures, sometimes dangerous for a baby with a bleeding disorder (ie:  rough personnel and the heel prick).  We were there for one reason, and that was the cord blood testing.  He did not have hemophilia.

Now, we are 12 weeks along with baby #5.  We will find out around Easter time if baby is a boy or a girl.  Plan A is a home birth with cord blood testing and a trained professional with emergency equipment.  Plan B is a gentle water birth in a hospital with a midwife where our birth plan is respected and we can get the cord blood tested for factor 8 level.  We will continue to grow and learn, and we will never compromise our baby's safety.  If we are having a girl, we will probably plan a home birth. 

Bubble Wrapped Birth is a passion of my heart.  Thank you for joining me on this amazing and precious journey!

So much to be thankful for. . .

Today, I heard a story of a symptomatic carrier who nearly lost her life during the birth of her first child.  I also heard from a woman who's daughter has severe hemophilia and was badly bruised at birth.  My heart broke for these families, and I ached as I imagined what they went through at that time.

If you've read my birth stories on here, you know I've never gone through anything like that.  So many people deal with so much more than we do.  Something like that could happen to us at any time.  We need to thank God for his loving mercy in sparing us from such hardships as these.  We should never take anything for granted.  Every moment is a gift.

I also heard from some other moms today.  What stuck out to me about them was their ability to look back and have total confidence that they did what was best for their baby.  That has never meant more to me than it does now. 

In the past, I've met moms who were not given the best care, and their baby suffered much for it.  It is hard for those moms not to personalize the blame, even when they too were also a victim. 

These may be somewhat random thoughts.  I just want to pay tribute to this amazing community we've been a part of for almost 3 years now.  I learn so much from all of you.  I really believe that we are much stronger when we have each other.  Thank you so much for sharing your stories and insights.  I thank God for you!

Back Labor

So, today we were talking about back labor on facebook.  Well, it didn't start out about back labor.  I started by making this statement: 

"The worst position to give birth is lying on your back. This position reduces the size of the pelvis by up to 30%! This is especially dangerous for babies with hemophilia since that would threaten the use of vacuum or forceps if the baby appeared to be stuck, and those interventions are the leading cause of headbleeds for newborns with hemophilia. Get off your backs, ladies!"

One mom commented that she strongly disagreed, and said that she had suffered terrible back labor for all 4 of her births, and the only position that worked for her was on her back, pulling her feet up (in a frog position).  She said that pulling her legs up also allowed her tailbone to move.  I asked my BWB fb page readers if any of them had a similar experience with back labor.  One mom agreed and said that this position was also the only one that worked for her.  However, it seems that it only worked for the pain because her baby got stuck, and they used a vacuum on her. 

So, my question is:  What is the safest way to deal with back labor?  I've never had back labor, but I want to know what I could do if I ever were dealing with the pain of back labor.  Another mom commented and said that her husband pushed his fists into her lower back as hard as he could for counter pressure while she squatted or leaned forward.  To me, that seems like the ideal choice.   Although, it may not be feasable for all back laborers, it is currently my plan A if I were ever in that situation.

Our Fourth Birth - Malakai (part 2 - Birth Day!!)

My mom and Grandma arrived Thursday morning. I was miserable! I felt so sick, and was so upset about not being able to fully focus on our soon coming birth. Everyone agreed that Matt should take me out to dinner, and get me out of the house. I hadn't been out for about 2 weeks due to flu season! We went to Red Robin for dinner. Then we walked around Target and Walmart. It was so refreshing to be out with Matt. Throughout the evening, my mild contractions became pretty regular at about 5 minutes apart. I told Matt that I bet Malakai's birthday would be November 6th! We came home, and I went to bed. Matt stayed up making sure everything was ready if we needed to go to the hospital in the morning. I had contractions all night, and also got some sleep.

In the morning, my contractions began to get better. I couldn't talk through them at about 8:30. We began timing them. They were between 5 and 7 minutes apart. They got a little closer together, and I decided to take a shower. That really helped! I had 6 good contractions while I was in the shower. When I got out, I called Matt at work, and told him it was time to come home! We left for the hospital in about 15 minutes or so. The ride really wasn't as bad as I had feared it would be. Matt did speed, and didn't exactly obey every traffic law!

We arrived at the hospital a little after 10:30 am. Our midwife, Eileen was waiting in our room. The pool was set up and filled. The bed had been moved out to the hallway. :o) We met our nurse. This was one of the many amazing things God had planned for us. Our nurse had had 4 homebirths. 3 in the water! She was so exited about us. She had requested to be called in to be our nurse whenever we checked in. She was awesome! I had to get some blood work done between contractions, but refused the IV. I am not sure when I got in the pool, but I fell in love with that pool! Oh, soooo nice!! I had to get more blood taken. It was ok. We just went with it.

Eileen knew I wanted lots of privacy and space. So, she and everyone else left Matt and I alone for a while. It was nice! She checked on us periodically. My contractions got better and better. It was getting nearly impossible to be in a comfortable position through them. Yay!! Then, I told Matt to kneel down in front of me. I grabbed his shirt and got through my much stronger contractions. Quietly in my heart, I was really hoping Malakai would be born with just the two of us there. A couple minutes later, I braced myself, gripped Matt's shirt and felt my body begin to push! Matt asked me if my water had broken, but I could not speak. My body bore down again very strongly. I felt my tailbone move up and out of the way as Malakai's head came out!! At that time, Eileen and another midwife came in to check on us. Eileen heard me make a grunting noise, and said, "Oh! Is it time?!". I said, "Yes, the head is out." In fact, his bag of waters was still intact around his head! When I felt his head, it felt so amazing being in a water balloon! I relaxed for a moment. Then, my body pushed the rest of his body out. His water broke as his shoulders were born. I lifted him up out of the water and to my chest!

His heart rate was good. He was limp and getting more purple, though. We rubbed him, kissed him, spoke to him, and he wasn't snapping out of it. It had only been a minute, and sometimes water babies don't breathe for a whole minute just because they are not stimulated to breath until they are out of the water. Eileen gave him a few breaths mouth to mouth. He gave a little gasp and squeaked, but not enough. Katherine (OB that works with Eileen) gave him a few more breaths, and they cut the cord to get him to a flat surface. When they suctioned him, they found that he had swallowed some meconium. He pinked up right away. This particular situation would've been handled well at home too. I am very pleased with the care he received at the hospital. Everyone was very calm and acted quickly. They were great!

They brought him back to me in the pool. It didn't take him long to show me he was a pro at nursing! Soon my placenta was born. Then, we got out of the pool.

So, that's it! All of the fear, planning, tears, praying, and frustration about Malakai's birth came down to a very unusual hospital birth! Matt and I got to share a moment between just the two of us that we couldn't have even had at home! His birth began as an unattended birth, and I caught him myself! Malakai's birth was definitely the easiest I have ever had. I guess it helps to have a 10# 14oz baby before to plow the way!! lol!

For the record, the birth itself was the best part of our hospital experience. We were not thrilled to have to deal with the many unnecessary hospital protocols that you don't have to deal with at home. It is definitely not as restful to stay at the hospital, and soooo many people have their hands on your baby. You don't have as much say in your baby's care as you do at home. Yes, I'm still partial to homebirth, but now I know hospital birth can be awesome too! For us, the baby care afterwards was the main headache. We had nice people. All the required tests and procedures and middle of the night disturbances are not nice though!

God totally blew me away! . . . and, Malakai doesn't even have hemophilia after all of that!

Malakai Thomas Reeves was born on November 6th, 2009 at 12:32pm in a birth pool at Women's and Children's Hospital in Buffalo, NY. He was 7lbs. 12oz. and 21 inches long. His actual birth was mainly attended by his Daddy, and he was caught by his own Mommy.  "God has not given us the spirit of fear, but of POWER, and of LOVE, and of a SOUND MIND."  "I can do ALL things through Christ Who strengthens me."  God is truly awesome!!!  That was the beginning of Malakai Thomas Reeves!!  Whew!